Adoption & Epilepsy

Ask any adoptive parent about their home study and they will tell you about the invasive questions they were asked.  Most of us have stories of the awkwardness of a complete stranger sitting calmly in our living rooms while demanding information that would make even the most open person blush.  It is the adoption equivalent of prenatal care.  Birth mothers have to put their feet up in the stirrups for the OB/GYN but we have to open our nightstand drawers for a social worker. 

Looking back, the part of my home study that stands out the most is not the section with the intimate questions, it was the discussion about the children we would someday take into our home.  I vividly remember the social worker asking us if we were interested in taking in children with special needs.  My husband and I had spoken at length on the topic ahead of time and told her that we were willing to take on learning disabilities or minor challenges.  I remember saying that I admired the families that fostered and adopted kids with special needs but that just wasn’t us.  I said it wouldn’t fit our lifestyle. It all feels pretty ironic now.

When I was pregnant with my son, I prayed that he would be healthy and did everything I could to give him the best shot at a good start.  I stayed pretty healthy, went to my appointments, decorated a nursery and ate animal cookies every time my developing baby demanded them. Still, I knew that there was always a chance that something would happen and we could face challenges.  Even when you do everything you can to improve the odds, childbirth really is something of a crapshoot. Adoption is different though.  A professional comes to your home and writes out exactly what you are looking for in a child. She asks you about race and age and gender.  You get a choice about disabilities, except when you don’t.

Finding out that your child has a disability can be devastating for any parent.  We often go through the stages of grief much like you would after a death but we can cycle back through them with each new limitation, emergency or worsening prognosis.  We have to learn to live in Holland and give up on dreams that we cherished since we ourselves were children.  Often all of this is done while in crisis so we do not have the time to sit down and fall apart because we are fighting desperately for our children’s lives and futures. There will come a time when we adjust to this new life but the initiation is brutal and leaves wounds that never really heal. 

Looking back I think that our adoption experience complicated how I processed Alyssa’s diagnosis.  No parent wants their child to have disabilities but we had specifically requested a kid that was “normal.”  When I got the call about Alyssa, her case worker explicitly stated that she did not have epilepsy.  We had these grand life plans that didn’t involve constant trips to doctors and therapies or always having to live near modern medical facilities.  We did something good by choosing to foster and adopt so it didn’t seem fair that the child we received was not the one we asked for. I was angry about the unfairness of it all for a very long time.

I relate to the other parents of children with special needs on many levels but I don’t bear the guilt of having been the one to pass on Alyssa’s genetic disorder or the constant questions of if it was something I did caused her problems.  I relate to adoptive parents too but our story isn’t just about adoption anymore.  I switch back and forth between groups depending on the support I need at the moment.  It is hard to find your tribe when you really fit somewhere in the middle and it is easy to feel alone when there isn’t a group with your name on it.

I don’t say all of this to make anyone feel sorry for us.  I am not asking for pity or pats on the back or patronizing comments about how God only gives special kids to special people.  I have realized over the past few weeks that there are many other families that find themselves in our position and I think maybe they struggle like I have.  I’m writing this tonight for the people who aren’t quite sure what group they belong to.  I’m writing to the mother who is raging at God for rewarding her good deeds with the chance to watch her child die.  I’m writing this for the people that lay awake at night wondering what they did to deserve this horror.  I’m writing this for the person who feels guilty because they are so angry and overwhelmed when that gets mixed up with the fear and grief.  I’m writing this to the parent that feels alone because I want you to know that I’m here too.  

We said exactly what we could handle and life didn’t listen.  We had great plans for the families we were building but those changed when the special needs surfaced. It is confusing and hard and not at all fair.  I can tell you though that it will eventually get better.  I know you didn’t ask for these trials but I also believe that you can make it through.  Give yourself some grace, accept the messiness and just keep breathing.